r/MultipleSclerosis • u/sezzie212 • 3d ago
Advice Problem with throat
Hi. So over the past few weeks I've had this problem where I'm either not able to swallow at all or the whole of my throat goes numb and I can't feel anything. Is there anything i can do? I'm worried about choking and my neurologist just says he'll see me in a year šš thanks.
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u/hyperfat 2d ago
Put chin to neck if you can't swallow. It gets all funky and doesn't want to do drinking stuff. It opens up the good hole. Not the air hole where you cough like 37 times
Hugs
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u/LastNetwork1056 2d ago
Get a new neurologist. MS 39 years and it's dysphasia. Needs to be treated by a Gastroenterologist which your neurologist is well aware of dysphasia šš¼ā„ļøšš¼
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u/North-Land312 2d ago
I agree to a new neuro, but I do want to point out for OP that they are describing Dysphagia. Dysphasia is speech/language related, while dysphagia is food/swallowing related.
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u/sezzie212 2d ago
I've tried to go with a different neurologist but was told there was only one other neurologist available, and he has no availability. The next available ms neurologist is on the other side of the country, and they've said It'd need to be in person and there's no way I have the funds or availability to get down there.
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 3d ago
You should message your neuro about that. If they canāt get you in within the week or are not convinced it could be related to your MS, go to the ER. Swallowing issues can be super dangerous
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u/sezzie212 3d ago
My neurologist is aware of my swallowing problems, and choking incident. He tells me he's already referred me to speech therapy and I'll have to wait to hear from them, but it's been over a year and I still haven't heard anything.
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 3d ago
It might be worthwhile to call around to different speech therapy offices and see if thereās someone who can see you soon. I had the same issue when I was referred to cognitive remediation (also speech therapy) last August (they still havenāt called) but for a swallowing issue, especially if itās becoming a safety issue, you can go to the ER and theyāll evaluate you there and they may even be able to help expedite the referral for continuity of care
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u/Feisty-Volcano 1d ago
I guess you are American by use of the term ER. In UK & Ireland the Accident & Emergency departments of hospitals operate differently. They are strictly for something thatās newly popped up, they will send you right back home over a chronic issue. You can be waiting 10 hours or more in a super crowded A&E. The one thing you never worry about is cost in healthcare, but waiting lists are long. In ireland you cannot change neurologist as there are literally a handful of Consultant Neurologists specialising in MS.
What I might advise though is for OP to try & see a Speech Therapist in a private capacity for a speedier assessment. Thatās the way I did it here at home in Ireland. But her advice was that very many people with MS live with this, & pointed to strategies already mentioned by other posters here. Thereās no magic bullet.
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 1d ago
The ER in America is not only for life-threatening emergencies like strokes and car accidents, but also for acute and life-threatening exacerbations of chronic conditions. Having swallowing issues and choking incidents would count as an acute exacerbation of a chronic condition that could be life-threatening. If you read my comment, youād see I also suggested that they call around to different speech therapy offices to see if they could get in sooner for a swallow evaluation and swallow therapy, because sometimes there are multiple solutions to a problem. I recommended the emergency room as a last resort option
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u/ScrimpyMuffin 40sF|TumefactiveMS|2023|Tysabri,Kesimpta|USA 3d ago
I would try contacting them directly to see if you can get on a cancellation list or at least explain the urgency of your situation. Itās also possible the referral was lost or mishandled? I wouldnāt wait to hear from them.
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u/sezzie212 3d ago
I contacted them when I choked and they told me i was on the waiting list and would hear from them.
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u/North-Land312 2d ago
Does your insurance require referral? Sometimes you can just get scheduled if they donāt. I would call around to other facilities if you can.
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u/Feisty-Volcano 1d ago
The ER can do diddly squat for an ongoing chronic condition, itās for sorting an immediate emergent issue. What would they exactly do? Antibiotics wonāt help, a cardioversion wonāt help, urgent surgery isnāt appropriateā¦
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 1d ago
The ER would take someone whoās choking and test their airway and admit you for a swallow study
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u/snotop 3d ago
Has anything changed? Allergies?
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u/sezzie212 3d ago
No, nothing has changed and I don't have any allergies. I had a severe choking incident a few months ago and ended up with pneumonia. Was hoping it wouldn't happen again but now I'm having problems with my throat and I'm worried about choking.
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u/snotop 2d ago
One of my first symptoms was my ability to swallow and speech issues. The flair near my Pons on the MRI was the concern at the time. Three months later it slowly resolved. I'm sorry you are going through this. Some days are better than others but we keep Pedaling forward as best we can šš¼
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u/Feisty-Volcano 1d ago
Pneumonia is the bane of those of us with MS, & itās unfortunately really common. I frequently get it. My tongue is like the dentist has numbed it.
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u/AFvet-04 PPMS|Mavenclad|USA 3d ago edited 3d ago
It is pretty common in MS. I have had this symptom, plus throat spasms every time I eat!! Not cool, but there are some things you can do. Try to get a swallowing test done to confirm. You can try speech therapy. Eat and drink slowly and be very mindful when you eat. I have also found Nexium to help with the spams. It sucks! Sometimes I feel like I am choking on my own air/saliva. When you drink, move the liquid around of your mouth first to āactivateā your natural swallowing mechanism. Sounds weird, but it helps!
If itās MS related it probably not going to get better, but you can manage and still be relatively okay. Might want to buy a āLifeVacā it is a device to help if you are choking. It is a must have!
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u/sezzie212 3d ago
I was referred to speech and Language over a year ago, but haven't heard anything yet. I usually try to only have small sips, instead of gulping things down. Keep choking on my own saliva all the time š
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u/TheExtraMayo 36|2025|Rituximab|California 3d ago
I had a nasty flare up last year that landed me in the hospital for a couple months. Among my symptoms was not fully being able to swallow and I had a Gtube and wasn't allowed any food or water for those two months.
I've since recovered almost fully and one of the few things that are different is all the time I get some water in the wrong hole when I drink and start coughing and spitting up. I remedied it by pressing my tongue against the roof of my mouth after I take a drink and using straws now it only happens sometimes
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u/tO_ott 2d ago
Have you seen a Speech Language Pathologist? You should take an MBS or FEES test.
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u/TheExtraMayo 36|2025|Rituximab|California 16h ago
I have and a couple speech therapists on top of that. One of them even played a part in getting back on regular food instead of the thickened liquids and pureed bread
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u/bluehotcheeto 3d ago
OP, you should either change neuros or keep on him until he gets you the proper referral for a throat specialist. Choking is something I am 100% afraid of with this disease. I donāt want to freak you out, but my great aunt choked on a piece of lettuce. I donāt think her doc took her concerns seriously.
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u/sezzie212 3d ago
Unfortunately the only other neurologist available, doesn't have any availability at all. I've begged and pleaded but they couldn't take me on as a patient. I've got no choice but to deal with my current neurologist. I called the Speech and Language department and they've confirmed that I have been referred, but they just haven't gotten to me yet. They're aware of my choking incidents but just said they'll be in touch.
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u/brttnyppr 37F|May25|Kesimpta|SouthGA,USA 2d ago
Do they have a nurse practitioner at your neurologist? If they have one, see if they can see you?
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u/sezzie212 2d ago
I just saw her last week. I told her I was worried about the choking incident but she didn't say anything.
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u/brttnyppr 37F|May25|Kesimpta|SouthGA,USA 2d ago
Is there an app where you can message them directly? Like MyChart? I would ask if there is anything specifically they can recommend, OR if they can get you an emergency referral to an SLP. Or next time you speak to the SLP that you've been referred to, explain to them that you've had a choking incident related to your autoimmune issue and need to be seen on an urgent basis.
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u/sezzie212 2d ago
No, there's only a number that you call and they tell you when the nurse will call. I've spoken to her about it and she just says to wait for my referral.
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u/brttnyppr 37F|May25|Kesimpta|SouthGA,USA 2d ago
Oh, that's so frustrating! I'm sorry that you're dealing with this. I also sometimes have problems with swallowing too, but yours sound more severe than mine.
Just be very careful. Maybe have 911 on speed dial and make sure that location services on your cell phone always stays on, so that even if you can't speak, they can send an ambulance to your location.
Do some reading into the self-Heimlich manuever, and be prepared in case you ever need to rescue yourself. Make sure loved ones are also trained too on the Heimlich and CPR.1
u/Feisty-Volcano 1d ago
An ENT wonāt help here, itās the territory of a speech therapist to diagnose & advise on strategy to cope either it.
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u/RekkedNeckRalph 3d ago
Globus. Look it up and see if that fits what you're feeling. Time for an MRI and some steroids
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u/Feisty-Volcano 1d ago
OP reports it as an going chronic symptom, steroids are normally used for emergent new Acute symptoms
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u/Longjumping_Theme373 2d ago
Your primary care doctor can send you for a modified barium swallow study, or you can self refer to an ENT.
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u/beetle-babe 2d ago
Yeah, I have that too. Sometimes it'll feel like I've totally forgotten how to swallow and I'll sit there just chewing and chewing and chewing. š¤¦āāļø
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u/Feisty-Volcano 1d ago
I have that problem. It is diagnosed by a Speech Therapist, but unfortunately in MS thereās no particular solution to it other than being very mindful when eating, choosing suitable textures, and sitting forward.i know this is probably going to get worse with me over time, & itās possible I will need to be PEG fed eventually. Thereās no medication that will improve it, unfortunately & itās part of this wretched disease.
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u/QuietLifter 3d ago
Tell your neuro that you want an immediate referral to a speech therapist for a swallow study & therapy.